Dear Team,
Sorry to bother again, but I am in a dilemma over this rather (on the face of it simple) questions from the PIP review form.
1. Its Question 22 asking about hospital admissions, stays, care plans... It appears I need to list overnight hospital stays exclusively? I have had several day treatments and actively avoid anything longer. I take it they don't need to be listed?
From my assessment report which I had to get through a SAR, I found that the HP/assessor keeps bringing the 'no evidence , no treatment planned, no hospital admissions' as their justification for nearly every question. Not withstanding the fact I told her about the ones I had at the time during the assessment.
But this time round for the Review, I do not have 'long' stays or frequent admissions for the following reasons.
"As a human with multiple chronic progressive multimorbid physical conditions, mental health, neurodevelopmental disorders and cognitive problems, and someone having several A&E admissions (nearly once a month)all the way up to 2020, that post pandemic I have received way less support when I have sought help during extremely difficult and distressing times including flare-ups and accidents.
It is the penalty I pay for having invisible conditions that won't kill me immediately or as short period of time but make life impossible by gradually grind out the ability to live like a human.
The general response tends to be " You are not dying!" or "We can’t help you, its not a heart attack". This after going through hours of agony and distress to get through 999 and 111 along with the never getting any ambulances as ‘I am not critical or dying’ and >10-18 hours of wait on a chair/bench(if that) without even a bed or stretcher/bedsheet or a pillow, water, I'm left to lie undignified and vulnerable whilst awaiting any medical assistance that may ever be forthcoming. My existing symptoms are worsened by the anxiety, stress and not knowing how I will manage my incontinence, paraesthesia and flared symptoms during this period. Even when I finally get seen, there is very rarely a clinician who will treat things as they are.
I have also been administered unhelpful medicines and treatment without my consent in the past which makes my hypervigilance worse. My symptoms also worsen my limited ability to speak- which staff dislike and insist I speak even though I provide notes in writing.
This is plain hell and when I don’t get the support despite my efforts, therefore try to avoid it at all costs. Tbh, I don't think I would want to go through this even if I had suffered a heart attack.
For e.g. I had a severe reaction to a certain ADHD medication two months ago and despite my carer’s insistent requests. I resisted as I feel if I must endure all this, I might as well be in a dignified and safe place.
This true for my when any of my existing conditions exacerbates or any emergencies.
Earlier this year in January, I didn’t want to go to A&E despite a severe fall where I managed to hurt my left hip, foot & leg badly. When things became worse on the next day I was instructed by my GP to go, the 111 team couldn’t understand me or facilitate my needs. Finally I was carted off to the nearest A&E and left without any regard of my needs or other conditions, or safety even so much so that A&E doctor examined the wrong foot and totally disregarded elements that was explained to him.
I know the NHS is already stretched but if I can't get any help, I don't want to add to the problem. . "
The italicised blurb is my basic initial response but my carer has been implying this may come across as unhelpful. As an Autistic person I could do with a straight answer but I appreciate it may not be easy for people.
Should I explain this in my form or just include this? I don't wish to be difficult to the assessor/Case Manager/DWP etc but want to clarify things. I would like your thoughts on this please?
3. Qn 23. Care plans - I had an OT assessment around the time of the initial PIP application but was never given a plan despite multiple requests. This time round I am due to have a care assessment but had to delay it in order to prioritise working on the PIP review form etc. Is this relevant information for the form?
I have ongoing treatment but none formulated in detail as a plan. They are just contained within a few summary letters. In light of this, I am unsure if should check Yes to Qn 23. Do you have a care plan or treatment plan?
I hope this makes some sense.
Thanks so much for your input and support.
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